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Thread: Zolgensma FDA approves possible cure for spinal muscle atrophy

  1. #1

    Zolgensma FDA approves possible cure for spinal muscle atrophy

    PBS Newhours did a story last evening on the FDA approving Zolgensma a one-time infusion drug that sells for $2.13 million dollars that can cure spinal muscle atrophy. Spinal muscle atrophy is a genetic disorder but not a spinal cord injury/disease. I could not find the PBS Newshours story but here's one close to it.

    I have know several people with SMA and they did not live past 30 years of age and have passed away. To pay $2.13 million dollars and a have no SMA as said in the video, "There is no price on human life."

    To pay $2.13 million dollars for a one-time infusion to cure a spinal cord injury/disease is it worth it? I say, "Yes."

    The amount of money my insurance companies spent on my injury over the past 32+ years far exceeds $2.13 million dollars. Time of my initial injury I was in the hospital 5-1/2 months. My 23 day stay at the Cleveland Clinic in 2016 and visiting nurse for six months for an empyema and wound dehiscence was over $250,000.00 dollars.

    "We must overcome difficulties rather than being overcome by difficulties."

  2. #2
    Senior Member
    Join Date
    May 2010
    Southern California
    This is a treatment appropriate to small babies with one particular disease. It has been helpful stopping the progression of the disease but does not seem to reverse damage already incurred. It is great for saving young lives but many of them will still be in chairs. Insurance companies have decided this treatment is worth the money, which is good. Those companies will still be paying our for the various ills that afflict people in chairs.

    If medicine gets better at detecting this gene before birth, and if detection testing is more widely practiced it may become away to prevent most damage and those babies can end up relatively normal. It is a great step forward.

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